PARENT/ GUARDIAN INFORMATION FORM
PARENT/ GUARDIAN INFORMATION FORM
Thank you for taking the time to read this Parent/Guardian Information form. We would like to invite your child to participate in a research project that is explained below.
What is an Information Form?
These pages tell you about the research project. It will clearly explain all the steps and procedures of the project. The information is to help you decide whether or not you would like your child to take part in the research. Please read this Information Form carefully.
Before you decide if you want your child to take part or not, you can ask us any questions you have about the project. If you would like your child to take part in the research project, please proceed to filling out an expression of interest form. In filling out this form you acknowledge that you understand what you have read in the Parent Information Form and you have had a chance to ask questions and received satisfactory answers.
1.What is the research project about and who is funding this project?
This project involves teaching magic tricks to children with hemiplegic cerebral palsy to increase their hand skills and feelings of confidence. Occupational Therapists and Professional Magicians will work together to run the Amazing Magic Club for two weeks during a school holiday period, and then once a month for 6 months. Magic is a motivating way for your child to use their two hands together. Your child will be assessed with regard to hand function, participation in everyday activities and feelings of confidence. This study is being funded by The Arts Health Institute, a non-for-profit organisation.
2.Why is my child being asked to be in this research project?
This project is designed for children who have hemiplegic cerebral palsy where one side of the body is affected. To be involved, your child must also be aged between 8 and 16 years, attend a mainstream school and have an interest in magic. We cannot include your child in this study if they have any new or different upper limb therapy programs such as splinting, casting or botulinum toxin A (e.g., Botox) injections in the 3 months before the Magic Club, or in the 6 months after the Magic Club two week intervention. We will also exclude children with an intellectual impairment. By participating in this research, your child would contribute to the research of alternative approaches to upper limb therapy. If your child is 12 years old or older, please give them the Adolescent Information Sheet attached so that they can understand what is involved in the Magic Club.
3.What does participation in this research involve?
Your child will need to be available for every day of the two-week Magic Club from 10am – 4pm during two consecutive weeks of the school holidays, not including the weekend. During a typical day, your child will learn and practice two or three new magic tricks, use a knife and fork to eat lunch, participate in bimanual gross motor games, and will make magicians costumes in craft sessions in the afternoon. We will ask your child to agree to using two hands in every activity to the best of his/her ability. Your child will also have homework tasks set each night by the Magic Helper (an Occupational Therapy student). The monthly follow-up sessions will run for 3.5 hours on the first Saturday of every month for 6 months. Throughout the Magic Club and for the monthly follow-up sessions, you will be required to drop your child off, and return at the end of the day to pick your child up. You are also encouraged to assist your child with homework tasks, both during the two-week intervention and between the monthly sessions. After the last day of the two-week Magic Club, all the children participating in Magic Club will put on a performance to showcase their magic tricks. You and your family and friends are encouraged to attend this performance.
Your child will participate in assessments at five stages: 5 weeks before the Magic Club, immediately before the Magic Club, immediately after the two-week Magic Club, three months after the two week intervention, and again 6 months after the intervention. Five weeks before the Magic Club is due to start, you will receive two questionnaires in the mail. There will be one questionnaire for you to complete, and one for your child. These questionnaires will ask about your child’s levels of motivation and persistence, and it will help us to support your child at Magic Club. We ask that you complete this questionnaire and mail it back to us at the University of Sydney within one week. In the mail, you will also receive a return envelope and instructions on how to complete the questionnaires. All the other assessment stages will be face to face with the researchers. We will assess hand function, explore participation in every day tasks through parent and child reports, identify your child’s level of motivation through a child and parent questionnaire, and explore psychosocial skills such as confidence and self esteem through two parent reports and in an in-depth interview. Assessment will take approximately 1.5 hours, and you will be asked to be present with your child. The assessments will be conducted at a community centre in your capital city at a time that is convenient for you. One of assessments completed will be videotaped, the Assisting Hand Assessment. This assessment looks at your child’s hand skills, and is filmed so that it can be scored separately by a specially trained Occupational Therapist. All of these assessments will be conducted by the principal researcher, except for the in-depth interview, which will be conducted by a clinician who is separate to the Amazing Magic Club. You will be contacted one month before the Magic Club by the principal researcher to organise a time for the pre- assessment.
4.What are my child’s alternatives to taking part?
The Magic Clubs is currently only available as part of research. Participation in this research project is voluntary. It is your choice to let your child take part in this research. You do not have to agree if you do not want to. If you give your consent and change your mind, your child can withdraw from the project. You do not need to tell us the reason why you or your child wants to stop being in the project. If your child leaves the project we will use any information already collected unless you tell us not to. If your child does withdraw either before or during the Magic Club they will no longer be able to continue participating in the Magic Club or in the monthly follow-up sessions. Whatever your decision, it will not affect any treatment or care your child gets, or your family’s relationship with The Cerebral Palsy Alliance or at the University of Sydney.
5.What are the possible benefits for my child and other people in the future?
The Magic Club allows your child to meet and build friendships with other children with hemiplegia. We also plan that the Magic Club will lead to improvements in your child’s bimanual hand function, and in their ability to cope in everyday life through an increased sense of confidence. Your child will gain a new and highly valued skill, which most children do not generally possess. Further benefits are that, through word of mouth, individuals working in the community as therapists may start to consider alternative types of therapy that are motivating and fun. The research on the Magic Clubs will add to the research about upper limb interventions.
6.What are the possible risks, side-effects, discomforts and/or inconveniences?
There is the risk that your child may find some magic tricks and activities challenging to complete with two hands. Each child will have one to one adult assistance which will help reduce this risk as the adult will provide encouragement where needed. A further inconvenience is that your child will need to attend every day of the Magic Club, which takes up the whole of the two week school holiday period.
7.What will be done to make sure my child’s information is confidential?
Any information we collect in this study will be used only for the purposes outlined in this Participant Information Statement, unless you consent otherwise. Your child’s information will be stored securely and their identity/information will be kept strictly confidential, except as required by law. Study findings may be published, but your child will not be individually identifiable in these publications. To ensure all information is kept confidential, all information will only be accessible by the primary researcher. Computer files will be stored in a password-protected computer and paper files kept in a locked drawer at the University of Sydney, Cumberland Campus.
We would like to have your permission to keep the information we collect for this study, and we may use it in future projects. We don’t know at this stage what these other projects will involve. We will seek ethical approval before using the information and your child’s name will not be attached to the information. If you are willing for us to use your child’s data in a future project, tick the box on the attached consent form.
8.Will we be informed of the results when the research project is finished?
A written individual report will be given to you outlining your child’s results following the final monthly session. The results of the Magic Clubs will be published in peer reviewed research articles. It will also be in the PhD thesis of the principal researcher. It is planned that the principal researcher will present the results at professional conferences and forums sponsored by disability services organisations.
I have read and understand the Parent Information:
By completing and submitting the following information, you agree to proceed to the Expression of Interest page. This information will be used by our Occupational Therapist to discuss the study with you further, it will not be disclosed to anyone else.
The Magic Club has been developed and researched by Breathe Arts Research (UK) and brought to Australia by the Arts Health Institute. Our program is proudly supported by